H.B. teen off to Mayo Clinic for help with unusual disorder

Sept. 20, 2013

Updated Sept. 23, 2013 3:37 p.m.

1 of 5

Renee Sheffner gives her daughter Cherise Sheffner-Spaulding, a kiss, as Ginger, a rescue dog, cuddles between them. Sixteen year old Cherise Sheffner-Spaulding suffers from a very rare collection of disorders called dysautonomia. She has sought the help of several hospitals locally but nobody has come up with an effective treatment plan to stop the progression of the disorder. Her mother and friends are looking to raise money to send her to the Mayo Clinic in Minnesota for treatment in October, a medical center that specializes in autonomic disorders. ED CRISOSTOMO, ORANGE COUNTY REGISTER

1 of 5

Cherise Sheffner-Spaulding cuddles Ginger, a rescue dog, while resting at her home. "Ginger cheers me up when I'm feeling not so great, she makes things a little easier when I'm holding her," said Cherise. Sixteen year old Cherise Sheffner-Spaulding suffers from a very rare collection of disorders called dysautonomia. ED CRISOSTOMO, ORANGE COUNTY REGISTER

1 of 5

Renee Sheffner gets emotional as she talks about her daughter Cherise's condition. Sixteen year old Cherise Sheffner-Spaulding suffers from a very rare collection of disorders called dysautonomia. She has sought the help of several hospitals locally but nobody has come up with an effective treatment plan to stop the progression of the disorder. Her mother and friends are looking to raise money to send her to the Mayo Clinic in Minnesota for treatment in October, a medical center that specializes in autonomic disorders. ED CRISOSTOMO, ORANGE COUNTY REGISTER

1 of 5

Cherise Sheffner-Spaulding and her mom, Renee, before the 16-year-old started battling dysautonomia. PHOTO COURTESY OF RENEE SHEFFNER

1 of 5

Sixteen year old Cherise Sheffner-Spaulding suffers from a very rare collection of disorders called dysautonomia. She has sought the help of several hospitals locally but nobody has come up with an effective treatment plan to stop the progression of the disorder. Her mother and friends are looking to raise money to send her to the Mayo Clinic in Minnesota for treatment in October, a medical center that specializes in autonomic disorders. ED CRISOSTOMO, ORANGE COUNTY REGISTER

Renee Sheffner gives her daughter Cherise Sheffner-Spaulding, a kiss, as Ginger, a rescue dog, cuddles between them. Sixteen year old Cherise Sheffner-Spaulding suffers from a very rare collection of disorders called dysautonomia. She has sought the help of several hospitals locally but nobody has come up with an effective treatment plan to stop the progression of the disorder. Her mother and friends are looking to raise money to send her to the Mayo Clinic in Minnesota for treatment in October, a medical center that specializes in autonomic disorders. ED CRISOSTOMO, ORANGE COUNTY REGISTER

More about dysautonomia

Lauren Stiles, president of Dysautonomia International, said the disorder doesn't qualify as a "rare disease", which is based on the number of people who have it, but it is not very well known and much progress still needs to be made on how to treat the disorder.

"Most of us have never heard of it until we were diagnosed with it," Stiles said. "The importance of the autonomic nervous system has always been overlooked. Until recently, it really hasn't been focused on by too many physicians."

"The more awareness there is, the earlier patients will get diagnosed and the sooner treatment can begin, which can help avoid years of needless suffering," she said. "Treating one symptom at a time without thinking of the big picture is very frustrating for patients."

How to help

Here's how to donate to help Cherise make her way to Mayo Clinic or sent a card showing support:

HUNTINGTON BEACH The 16-year-old with the copper-colored hair and metallic nail polish that matched wanted to make a deal: this story could be written but it couldn’t be about her.

Cherise Sheffner-Spaulding made it very clear she only wants it told so she can help and comfort others who may be just like her – fighting dysautonomia, a disorder that attacks the autonomic nervous system.

But it needs to be about her a little bit.

It needs to tell how Cherise endures with unwavering resilience as her body fights viciously to keep her down; about how she no longer can do the things she used to love but has found a new solace in cooking and baking.

And about how her mother, Renee Sheffner, can only work part-time or at home so she can continue her role as Cherise’s biggest protector and advocate. Sheffner worked in the hospitality industry for years and is now working as a temp.

Cherise’s father died in a car accident when she was 7.

Dysautonomia can manifest in a variety of ways. Sometimes it is a symptom of other health issues, such as lupus; in other cases the disorder is its own debilitating condition that can wreak havoc on the body, making even the simplest day-to-day activities seem an insurmountable task.

The autonomic nervous system, referred to as the “control center,” is responsible for every involuntary function in the body including breathing, blood pressure, digestion and heartbeat.

In Cherise’s case, doctors have yet to find a definitive answer on how to treat her dysautonomia after two years of mounting questions.

“What’s hard is that it’s an invisible illness,” Sheffner said. “People look at her and think she’s fine.”

On Oct. 9, the Sheffners will head to the Mayo Clinic in Minnesota, a medical center that specializes in dysautonomia, in hopes of finding a way to manage the disease so Cherise can return to her former life: as a teenager who loved drama class at Huntington Beach High School, riding bicycles, swimming and dancing.

“I’m ready to be a guinea pig,” Cherise said. “They can test on me all they want.”

Frustrating diagnoses

Cherise and her mom have seen more than 15 doctors and have taken four trips to various intensive care units from complications Cherise has suffered over the last nearly two years.

It started with tunnel vision in January 2012.

Cherise said she would get up to walk to the door and by the time she made it about 10 feet, she could see only black.

“No matter how slowly I would get up, it would always happen,” she said. “It was so frustrating.”

After nine months of dealing with this compounded by dizzy spells and several tests, Cherise was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia with its primary symptom being fainting or lightheadedness when a person goes from lying down to standing.

But her symptoms continued to progress. In December of 2012, she suffered a transient ischemic attack, also called a mini-stroke, which means Cherise was not getting enough blood to her brain, her mom said.

New symptoms emerged over the next six months– fatigue, stomach pain after eating, difficulty breathing and walking, and vocal chord dysfunction, which makes Cherise speak in quiet, raspy tones.

In June, doctors diagnosed her with primary dysautonomia and now, her mom said, they want to find someone to treat the disorder.

“The doctors right now and the specialists only concentrate on specific symptoms and try to treat them individually,” Renee Sheffner said. “What is needed is someone to address it as a whole.”

Becoming an advocate

On a recent Tuesday, Cherise sat curled up underneath a handmade blanket with kittens on it.

She had attended a fundraiser a few days earlier that her mother and friends put on to help pay their way to the Mayo Clinic, and now she is so exhausted she can’t walk more than a few feet without a wheel chair or help from her mother.

The cost for her trip and treatment is not covered by insurance. It cost a $5,000 deposit to secure Cherise’s place at the Mayo Clinic.

Although Cherise smiles politely, with every question it gets harder for her to breathe until, at one point, she sounds as if she’s struggling to take any air into her lungs.

Her brow furrows, pain registers in her eyes and she puts a hand on her chest.

Then it passes and her sweet smile spreads back across her face. She insists she’s OK to go on.

This is the typical aftermath of a few hours spent off the couch.

Cherise can only last about an hour outside her home before her body demands she crawl back under her kitten-patched blanket.

“I push my self, probably a little too much sometimes,” she said. “Since I’m never able to do anything, it’s worth it to be able to have those few times where I’m having fun.”

Cherise, a student at Huntington Beach High who is homeschooled, used to love to bike ride to her friends’ houses, go swimming and dance at school.

Needing some kind of an outlet, she has discovered cooking and baking. She joined a group her mom belongs to that call themselves the cooking divas.

They meet every Tuesday and try out new recipes. Sheffner said she bought chairs with wheels attached to the legs so if Cherise needed a break she could sit and put herself around the kitchen.

“I like experimenting,” Cherise said. Cooking “makes other people happy so that makes me happy.”

Although being confined to the couch most days, seeing her friends drift and struggling with constant pain, Cherise remains positive.

“I just know that this happened for a reason and that reason is to help other people,” she said.

The mother-daughter team said they want to continue to inform the community about dysautonomia.

“I really feel that we can make a difference,” Sheffner said. “I think there are a lot of things undiscovered and we are the pioneers. Through us trying to get her to the Mayo clinic, we can bring awareness.”

Stiles, at attorney who copes with Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia, said her organization is pushing for more research to come up with better treatment.

User Agreement

Keep it civil and stay on topic. No profanity, vulgarity, racial
slurs or personal attacks. People who harass others or joke about
tragedies will be blocked. By posting your comment, you agree to
allow Orange County Register Communications, Inc. the right to
republish your name and comment in additional Register publications
without any notification or payment.